Use of Transition Resources by Primary Care Providers for Youth With Intellectual and Developmental Disabilities.

Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.

Parent resuscitation preferences for young people with severe developmental disabilities.

OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility. DESIGN: Retrospective, quasi-experimental study of policy change, with each individual serving as his or her own control. Interval comparisons were made between resuscitation choices before and after information was provided to families. For those who were originally in the full resuscitation group, comparisons were also made between those who changed to DNR and those who did not. SETTING: Pediatric skilled nursing facility in Massachusetts. PARTICIPANTS: Sixty individuals with severe mental retardation and complex medical problems, between the ages of approximately 2 and 32 years. MEASUREMENTS: Review of records regarding resuscitation choices and changes, with each person serving as his or her own control. Both univariate and multivariate analyses were performed on individuals who were in the full resuscitation group at the initiation of the study to determine distinguishing characteristics between those who remained in that group from those who changed to DNR. RESULTS: The families of 11 (18%) of 60 patients had requested DNR orders prior to requirement of written preference for resuscitation or DNR in the event of cardiopulmonary arrest. After provision of informative material, there was an increase to 26 patients (43%) who were designated DNR (P < . 001). There was no significant difference in characteristics between the groups that changed to DNR and those that remained full resuscitation, although there was a marginal trend of children in the group with an acquired etiology for their developmental disabilities were more apt to have their resuscitation status changed than those with congenital diagnoses (P = .053). CONCLUSION: When families are provided with explanatory information regarding resuscitation in a nonacute, pediatric skilled nursing home setting, there is a significant increase in request for DNR.

Out-of-Home Placement for Children and Adolescents With Disabilities-Addendum: Care Options for Children and Adolescents With Disabilities and Medical Complexity.

Children and adolescents with significant intellectual and developmental disabilities and complex medical problems require safe and comprehensive care to meet their medical and psychosocial needs. Ideally, such children and youth should be cared for by their families in their home environments. When this type of arrangement is not possible, there should be exploration of appropriate, alternative noncongregate community-based settings, especially alternative family homes. Government funding sources exist to support care in the community, although there is variability among states with regard to the availability of community programs and resources. It is important that families are supported in learning about options of care. Pediatricians can serve as advocates for their patients and their families to access community-based services and to increase the availability of resources to ensure that the option to live in a family home is available to all children with complex medical needs.

Out-of-home placement for children and adolescents with disabilities.

The vast majority of children and youth with chronic and complex health conditions who also have intellectual and developmental disabilities are cared for in their homes. Social, legal, policy, and medical changes through the years have allowed for an increase in needed support within the community. However, there continues to be a relatively small group of children who live in various types of congregate care settings. This clinical report describes these settings and the care and services that are provided in them. The report also discusses reasons families choose out-of-home placement for their children, barriers to placement, and potential effects of this decision on family members. We examine the pediatrician's role in caring for children with severe intellectual and developmental disabilities and complex medical problems in the context of responding to parental inquiries about out-of-home placement and understanding factors affecting these types of decisions. Common medical problems and care issues for children residing outside the family home are reviewed. Variations in state and federal regulations, challenges in understanding local systems, and access to services are also discussed.

End-of-life care policies and practices in pediatric skilled nursing facilities.

Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have elevated mortality with end-of-life care (EOLC) routinely provided. The present study explored policies and practice in such settings by surveying administrators, nursing directors, and medical directors in facilities across the United States. In addition to EOLC policies and practices, staff reported on their understanding of definitions of do-not-resuscitate orders, family involvement in EOLC planning, and the availability of in-service training. The presence of an official EOLC policy was associated with higher ratings of perception of effectiveness among staff. Staff felt more prepared and comfortable providing EOLC when in-service training was provided.

Unique and universal barriers: hospice care for aging adults with intellectual disability.

As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.

Child neurology: autism as a model: considerations for advanced training in behavioral child neurology.

In this article, we advocate for advanced training for child neurologists in behavior and development in order to facilitate the investigation of childhood behavioral and neurodevelopmental disabilities, with autism serving as a model disorder. We explore the current training options and then propose alternative subspecialty training options that focus on behavior and development, with appreciation that most developmental disabilities are not static encephalopathies but, rather, dynamic processes representing the influence of genetics and environment on neural circuitry.